Living with a rare disease is a challenge. Experiencing a life changing injury is a challenge. Experiencing both was life-altering. When One Diagnosis Becomes Two Life-Changing Challenges I was walking...
Living with Duchenne and the Importance of Clinical Trials I am 24 years old, living with Duchenne Muscular Dystrophy, and advocating for accessible air travel. Duchenne is a muscle-wasting disease...
Paving the Potholes in Advocacy We’ve all been there. You’re navigating a complex system—whether it’s healthcare, education, or government—and you hit a wall. You find yourself asking: That frustration is...
I Wrote a Book. Actually, I have now written two—a fact that still surprises me daily. If you had told me twelve years ago that I would be an author,...
Independence Shapes Everyday Life Independence is not a luxury – It’s a necessity, and it’s extremely important to me. For me, independence means being able to do things with little to no help from...
A Rare Diagnosis My husband and I both agree that Friday, February 13, 2015, was the worst day of our lives. We had endured a six-week diagnostic odyssey for our...
Today brings exciting news for the rare disease community, born from immense effort, patient advocacy, and a refusal to back down. In a historic move, Metachromatic Leukodystrophy (MLD) and Duchenne...
“Advocacy is key to the effective functioning of a democratic society and a free market economy.”1 Listening to Understand One of our core values at Patient Advocacy Strategies is listening...
